The High Tech Way

Palin versus Biden on family values and choice

John McCain's VP choice Sarah Palin's Downs baby is just 4 months old.  Personally, I was bereft to go back to work when my boys were just 3 months onld. I would have stayed home for 6 if I could have, and begged off from travel for longer than that.  I couldn't see myself running for VP if I had a 4-month old infant who was ill on top of it all.  I wonder if she's breastfeeding. I wonder if she's pumping. Still, I think it's a woman's right as well to decide if, when and how she will go back to work.

Yet I hear a disconnect here between Democratic VP candidate Joe Biden saying "Delaware can always get another senator, but my boys only have one father," (after his wife and daughter were killed in an auto accident that left his two sons in the hospital), and Sarah Palin running for VP of the US when her chronically ill baby is only 4 months old.

Her baby's Downs was diagnosed during the pregnancy and she chose to take it to term, which is every woman's right to choose. I'm glad that she made the decision that she felt was right for her family and for her faith. But I wonder what she will say when the pro-choice question comes up during the campaign, as you know it will.  Does she understand other women in her place making a different decision than she made?

37 weeks

Hard to believe that I am here already, to the place where they don't stop labor and consider you full term if you have the kiddo now.

When I was pregnant with Jack at this point in time my ankles and feet had already been so swollen for months that I couldn't wear any shoes but flip flops. My hands were numb constantly from the swelling and my occupational carpal tunnel syndrome. 

And I was afraid all the time that something would go wrong. And I was afraid of labor. I think I'd spent so long being disappointed in our fertility journey and heard so many horrible stories that I didn't think anything could go right.

A few months after we lost our Will (our trisomy 18 baby conceived by IVF), an online acquaintance who had conceived with her lone embryo during her second IVF went post due. I thought at that point she was home free.  But one morning she didn't feel her baby move anymore and when she went into the doctor's she learned the baby had died.  Horrible horrible horrible.  And the thought of that just stuck with me through my pregnancy with Jack.

Because when we started trying to conceive we learned that just getting that double pink line wasn't enough. We had the miscarriage.  Then we learned that getting past that critical first trimester wasn't enough.  That you CAN get a bad amnio diagnosis, even though the odds are tremendously against it.  And then, through this poor woman's experience I learned that even when you are beyond that point, even when you are days away from delivering, it's still not too late for everything to go to hell.

So I was in a bad mental place when I was pregnant with Jack. A place of anxiety and nightmares. Seems like I kept hearing more stories of late term losses that just fed it further.

Once Jack got here the world changed because I was finally a mom to a living child. Jack made that happen. He made that true.

This pregnancy I am healthier because of him. I carry him around all the time. (although these days carrying him up the steps is enough to make me groan).  My arms are skinnier. I have more of a basketball look than the overall fat look. I feel healthier.  Some woman at the pizza restaurant told me "you look great."

Now, my ankles are a little swollen and my hands occasionally get a little numb, but it is so much less than last time.

While all the bad things that have happened have not gone away, some good things have happened in the meantime.

And mentally this time I feel like I am not afraid of labor. I am not afraid of a c-section. I am not nervous about my ability or lack there of, of taking care of my newborn. I feel more confident about myself and ability to handle all these things.  And as for the breastfeeding, I feel like I have a better idea of what to do if things don't go well at first and where to go for help.

How infertility and pregnancy loss stimulates your brain

I was so blown away and flattered when Antropologa awarded me the Thinking Bloggers Award last month.

And and I've been hard pressed trying to figure out who to award it to next. It has been around to so many people who totally deserve it already, and there are so many others in the blogging community who deserve to be recognized for the insightful, thought-provoking and honest words they grace us with on a regular basis.

But I've got to say that I've been thinking a lot lately about those of us who have struggled with infertility and have used the internet community and the wealth of information available on the internet as a tool for education and teaching each other.  We learn what questions to ask the doctors, what treatments to ask about, and when we are being bullshitted. We know when we are being condescended to. We have taken this community and turned it into a tool for personal empowerment when dealing with the medical community.

So I'd like to present this award to Aurelia who is struggling through another round of thyroid testing after being jerked around the system.  She knows that things are not right, and she keeps going in spite of doctors just patting her on the head.   AND she also takes her message about infertility and pregnancy loss to the politicos where she is.  She is really a hero.  And so I'm happy to have the opportunity to give this award to her. 

Happy for this quad mom, sad for another

A colleague of mine pointed out this story today about the birth of quadruplets and how it made her misty to see such a happy ending. She is a conservative religious person and also pointed out how the couple had turned down the offer of selective reduction and everything worked out.

I am really happy for this couple too, and happy that they were able to beat the odds and deliver their quads healthy at 33 weeks gestation. But I knew of another mom in the same town a few years ago who had also turned down selective reduction and lost her quads at something like 22 weeks.  And I kept thinking about how this story must make that other mom feel.  And how it must make the other moms who at one time had been pregnant with multiples but did not beat the odds.

[I'm not advocating selective reduction and am not advocating against selective reduction. I think it's an individual choice that individuals must make with the risks in mind. There are risks of continuing with high order multiple gestation, but there are also risks that go with selective reduction.]

Indeed, my reaction to the story was to think about how many women would read it and be sad. Not because they are bitter. But because they miss their babies. My colleague suggested that the emotions of grief can be “channeled for good things.”

No doubt this is true, but when confronted with a story of the loss of quadruplets, do you tell the mom about the good work she should be doing? I don’t think so. Instead you let the person experiencing the grief guide the discussion. I think that Melissa had an excellent post on just this issue today.

I should have stopped having the conversation with this colleague, who is normally someone I genuinely like, in spite of our religious and political differences.  But I didn’t.  I told her about some other moms I knew who had gone through horrendous losses — one whose IVF baby was stillborn. And her response was “don’t some women have to face that maybe they aren’t supposed to be a mother through biological means?”

This question was tremendously offensive to me. I stopped the conversation soon after that. And I don’t think my emotional response was just a side effect of the Lupron.

On its surface the question itself asks something that someone wonders in a straightforward way: Don’t some women have to face that maybe they aren’t supposed to be mothers through biological means? (something that some of us may eventually have to accept.) But it skips over the tremendous grief that comes with losing a full term pregnancy. It skips over the the feelings of loss of identity and physical and emotional inadequacy that come with infertility. It ignores the fact that many of us feel screwed or abandoned by the God/the Universe.

It’s like asking a cancer patient, well, why can’t you just accept that your body has turned against itself? Or an obese person: don’t you know you need to stop eating so much and exercise? Or an unconnected person: can’t you just accept your career is going nowhere because you don’t know the right people and you never will?   

Not useful comments.

Trisomy 18 info and stats

I'm taking a moment out from the forward progression of my story today because I realized I didn't provide much information about Trisomy 18.  There is a comprehensive but brief summary about Trisomy 18 here.

Trisomy is a condition associated with a third number-18 chromosome.  Trisomy 21 is when there is a third chromosome on the 21st chromosome. Trisomy 21 is Down's Syndrome.

Trisomy 18, or Edward's Syndrome, is more rare than Down's

I've seen statistics for Trisomy 18 that it occurs in 1 out of every 3,000 births to 6,000 pregnancies that make it to the second trimester.  For someone my age -- 39 as of the due date of the baby, my chances of having a child with that problem was 1 in 441.  For a woman who is 39 years old, the chances of having a child with Down's Syndrome is much lower than that, although I don't have the number in front of me. 

(Interestingly, the reason why they start recommending prenatal diagnostic procedures such as amnio for women 35 and over is because that's when your odds of having a baby with a problem are greater than your odds of complications from the prenatal procedure.)

(That said, odds don't mean shit when you happen to be the 1 out of those 441 or 3000, or whatever number they give you.  I also have an online friend who lost her baby due to complications from an amnio procedure.  Each person needs to make the best choice she can for her situation.)

Trisomy 18 is considered incompatible with life. When my baby was first diagnosed by amnio, I met another mom online who'd had the same horrible diagnosis.  She really helped me through that first week. Since then I've encountered two other mom's who gave birth to their Trisomy 18 babies. One of the babies died the first day and another one lived for two months.  My OB told me about another patient in her practice who gave birth to her Trisomy 18 baby. That baby lived for a few weeks and underwent some major surgery during that time. But none of it was enough.

A nurse at the practice that diagnosed my baby's Trisomy 18 tried to tell us that the reason our baby had that condition was because we did IVF. THIS IS NOT TRUE! (When I pressed her about the source of that information, the nurse said it was true in her own anecdotal experience.) The doctor at that practice and our fertility doctor both confirmed that there is no correlation between IVF and increased incidence of genetic disorders.

That said, older women more frequently seek assisted reproductive treatments such as IVF than do younger women, according to my doctor. Advanced maternal age (sigh) is what causes odds of genetic disorders to increase.  But if more older women use it than younger women, and more older women have babies with genetic problems, then it would SEEM to that nurse as if IVF caused the problems.  But actually it was the maternal age all along.

I am reluctant to post links to Trisomy organizations here, but if you are faced with a bad diagnosis and are looking for some support, please email me and I'll send you the what I have.

The natural FET cycle

In spite of our overwhelming grief, we didn't have a lot of time. With my "advanced maternal age" in mind I was anxious to get started with a frozen embryo transfer (FET) cycle.  We had five frozen embryos, frozen at day 3 and all had gotten the top rating of A with no fragmentation.

My reproductive endocrinologist (RE) prefers to do natural cycle FETs -- meaning that I wouldn't take any meds at all. No estrogen, no progesterone, nothing. 

Instead, I would monitor for ovulation with ovulation predictor test kits (OPKs).  I would pee on a stick (POAS) twice a day.  The first time would be at around 10 in the morning and the second time at around 8 in the evening.  My IVF coordinator said that they tested twice a day so as not to miss the luteinizing hormone (LH) surge. The time of day of the detection would not affect the time of transfer.

It was a controversial choice in our RE practice, but we decided that if all five embryos survived the thaw then that was how many we would transfer. Our doctor agreed with the decision, but another doctor and the IVF coordinator were troubled by it. My logic went like this: of our two pregnancies, we knew that one had chromosomal problems for sure. The other one, with those low beta numbers was likely to have had chromosomal problems too.  And all the genetic counselors I spoke with said that at my age more than half of my embryos would be likely to have such problems.

(The reason why more of these don't show up is that they are miscarried before the problem is detected. That is why it is harder for someone of "advanced maternal age" to carry a pregnancy to term or even past the first trimester.)

I was monitored with a few ultrasounds over the course of the my natural FET cycle. The last ultrasound was performed after the surge was detected and that was done to ensure that ovulation had actually occurred. 

The transfer was scheduled for 4 days past ovulation (DPO).

Here's an annoying thing. When you get to the facility, they don't tell you right away how many of your embryos survived the thaw.  First you have to get undressed and put on the hospital gown and get your blood pressure taken and answer the nurse's questions and wait and wait and wait as you watch other patients be wheeled out for their procedures and come back again.  You can see the doc across the room, but they are too busy with other things to have a serious conversation with you. Yet.

My nurse on that day seemed as if she was 127 years old, and I felt like I should be helping her into the bed rather than the other way around. We made small talk about the color of the hospital socks. For my IVF egg retrieval and transfer I'd been given pairs of khaki-greenish socks with the rubber treads on the bottom to prevent slipping on the industrial floors.  But the day of my FET I got electric blue socks.  Very exciting.

Since my IVF, about 7 months earlier, my RE practice had moved its retrieval and transfer facility from a local hospital to its own brand new dedicated IVF facility, just down the hall from the RE's new offices.  I was the fourth patient ever to have a transfer done there as they had only opened the new facility a few days before.

My RE had told me at the beginning of the cycle that the clinic had a thaw rate -- a survival rate for thawed embryos -- of about 50 percent. Online friends had better rates than that, so I was optimistic.

After waiting what seemed like an eternity, the doctor (not my regular one -- they all switched off on who performed procedures according to the day) and the embryologist came over to tell me how the actual thaw had gone.  The results were disappointing.

Only one embryo had really survived, although on the form it said two had survived.  One was still 8-celled and in good shape. The other had only 2 remaining cells of its original 8. None of the others had survived.

So they wheeled me into the transfer room for a procedure that I was convinced would never work. We'd been through so much disappointment and grief already. We got to look through the microscope (as we had during the IVF transfer) at our two little embryos. 

Then I got on the table for the procedure.

LA LA LA LA

The weeks that followed were horrendous.  We cremated our baby Will's remains, and I put his things together in a blue leather box.  I felt like I'd not only lost my baby. I'd also lost my shot at motherhood.  The thought of NOT ever being a parent to a living child changes your idea of who you are. I missed my baby and I didn't know how I would ever feel ok again.

I've thought about how to capture the feeling here, and the idea of trying to do it made me not want to write anything. 

Know that it was just really really bad. The worst time of my life. I was in therapy. I was on Zoloft. And I felt like I was stuck there for an eternity. I just wanted my baby back.

I chronicled these awful days in an online community I belong to, and one day the community crashed and all the posts were lost.  In a way, it felt kind of freeing. It happened about 2 1/2 months after my loss.

The abyss

In the weeks that followed, I could not bear to be alone. When David got up and went to work (he works from home in an office at the front of the house), I would follow him and just sit there while he worked.  I didn't need to do anything.  Just sit there. As long as I wasn't alone.

This was so unlike me. I've always been independent and celebrated my time by myself.  Not now. Only despair. I never felt so fragile as I felt then. Like the breeze from the window fan might blow away the pieces of my crumbled self. 

The crash

Have you seen those VW television commercials where two people are driving along, having a normal conversation, and you think the commercial is going to be about something in the conversation? Then WHAM! Another car slams into the VW. It's a moment, an instant, where the world changes dramatically. Chests slam against seat-belts. Airbags deploy. Everything stops. The old conversation is completely forgotten.

At 12 weeks pregnant they tell you your risk of pregnancy loss is very very low.  The first trimester is over, and all those very important physical systems have formed in the fetus.  I was paranoid about this, because I had had a miscarriage before. (We were lucky enough, once, to get pregnant naturally, and found out on our wedding anniversary.  But the beta levels were low -- 14 at 16DPO (days past ovulation) and 29 at 18 DPO. The nurse said to be cautiously optimistic. I only heard the word optimistic and was devastated when we miscarried at six weeks pregnant.)

So at 12 weeks pregnant, when the risk of miscarriage falls to something like 2 percent, I was elated. After such a long wait on what seemed like an endless roller coaster of emotional lows and highs, our prayers were finally about to be answered.

For David's 40th birthday I wanted to give him something different, so I planned a trip to San Deigo for the weekend for the two of us towards the end of June.  It was a wonderful trip. I booked us a room at the Marriott on a high floor so we had views of downtown from our balcony. We had dinners at sidewalk cafes. We went to the Air museum (aircraft) and the zoo. I was almost 18 weeks pregnant.

We made the long drive back home on Monday, and within an hour of getting home we got the call at around 7 pm.  It was the results of the amniocentesis.  It occurred to me as David handed me the phone that the genetic counselor had said that if the results were bad, they would call in the evening.

It was the genetic counselor calling that evening. She said she was sorry. She was surprised by the results. I suppose that's because she's used to telling people that their babies have Down Syndrome or Trisomy 21.  She told us that our baby had Trisomy 18.  I did not know what that meant, but it didn't sound good.  I asked if it was a boy or girl and she asked me if I really wanted to know.  I told her I did and she told me it was a boy. It is hard to remember what happened next.  I think I hung up so I could look up more information on the Internet.

In all the information available on the Internet you'd think you could find something slightly positive about everything. But not about this. It is fatal. Of babies who are born, 50 percent die in the first week. 90 percent die in the first year. I think I found a place that said there are 20 teenagers alive in the world today who have this condition.

The perinatalogist's office that performed the amniocentesis and Level II ultrasound (the level II showed no problems at all, by the way), offered us the option of trying to take the baby to term or of terminating the pregnancy.

I don't know if I can express the emotions.  We wanted a baby so badly. We waited for years, and did the most advanced medical procedure available just to get pregnant.  And now we were presented with this choice.  I knew that God hated me.

We decided that for William's sake -- that was the name we had chosen years ago for our boy -- we would disconnect the life support. We scheduled a D&E for that Friday. I cannot write anymore about it right now. It profoundly breaks my heart to this day. I miss my baby. And not only did I lose my baby that day. I lost my hope.